November 2017
Newsletter

Inequity in access to essential pain relief and palliative care is one of the world’s most striking injustices, says Lancet study.

The Lancet commission on Global Access to Palliative Care and Pain Relief which included 61 authors from 25 countries, has published their report ahead of world palliative care day which falls on 14 October 2017. Of the 6 crores of people worldwide who need palliative care, 1/6th, that is one crore, are in India. Only a tiny minority of them has access to basic pain relief or palliative care.

Though the government of India announced a national program for palliative care in 2012, the budget allocation has been grossly inadequate and progress in the last five years is negligible. The Indian Parliament changed its draconian Narcotic Drugs and Psychotropic Substances Act, a major hindrance to access to pain relief, in 2014; but even today most Indian states have not implemented it. And sadly, basic pain management and principles of palliative care are even now not taught to medical and nursing students.

The theme of world palliative care day 2017 exhorts, “Don’t leave those suffering behind”. “People with advanced illness and pain are weakened by disease; they have no voice. Only a public outcry against the injustice done to them can save the situation”, says Dr.M.R.Rajagopal, the chairman of Pallium India who is one of the five lead authors of the Lancet report.

Pallium India celebrated World Palliative Care Day with a get-together of patients and families at Government Youth Hostel, Trivandrum. Famous playback singer G Venugopal inaugurated the function and mesmerised the audience with his songs. The event, titled “Thalolam 2017” was a full-day program and was attended by people who are wheelchair bound or suffering from life limiting diseases, and their families.

Dr. Biju Prabhakar IAS, Secretary, Social justice department, delivered the keynote address. Kalyan Ram, DGM, State Bank of India and Dr. C Mohanan Pallium India trustee spoke on the occasion. After lunch, there were cultural programs by patients, Mentalism show by Preeth Azheekkode and performace by Balloon Artiste Shijina Preeth.

One of South India’s leading deemed universities, Sri Balaji Vidyapeeth (SBV), Puducherry, has started the process of incorporating palliative care into its undergraduate medical curriculum.

We are certain that this would encourage all such institutions to bring in changes that allow professionals to work with more humaneness. Pallium India is proud to collaborate with Sri Balaji Vidyapeeth for this noble cause.

As per Human Rights Watch report, ‘Unbearable Pain, India’s Obligation to Ensure Palliative Care’ (2009), only 5 out of 300 medical colleges in India have integrated some instruction on palliative care into their curricula. Capacity building through palliative care education is also one of the recommendations by WHO. Palliative care approach envisages application of palliative care principles appropriately into practice by healthcare professionals.

We could firmly say that students of SBV are already into palliative care – if wall paintings in their palliative care ward and volunteering works by students are anything to go by. If SBV train students to make their patients smile wholeheartedly, it will be difficult for other students to compete with them without this important training! Moreover, life threatening conditions, dying, end-of-life care and death cannot be ignored anymore.

This is a feature film length biopic that uses the narrative of Dr. M R Rajagopal to shine a light on the existing plight of people in India and other developing countries in dire need of palliative care.

It is a powerful depiction of not just what the Hippocratic oath calls upon the medical community to do, but also challenges the increasingly profit-centric systems and the erosion of ethics that have transformed what should be ‘health care’ into the ‘health industry’.

Hippocratic’s emphasis is on access to palliative care, social justice and equitable healthcare. It is also a celebration of the indomitable human spirit, and the power that we as an evolving society wield to lift up our fellow humans from the depths of despair and darkness, into a life of dignity, free of pain.

Hippocratic is the work of Australia-based Moonshine Agency, directed and produced by Mike Hill.

Dr. Rajagopal has just completed a screening tour across Australia, where the film has been warmly received, amongst many accolades. The film is being screened in different countries. Find a location near you: http://hippocraticfilm.com/see-the-film/

The 25th Annual Conference of the Indian Association of Palliative Care (IAPCON 2018) will be held from 23rd to 25th February, 2018, at Jawaharlal Auditorium, AIIMS, New Delhi. The theme of the conference is Create, Collaborate and Communicate.

Pallium India, IAPC (Kerala), CET Cycle Club (CCC) and Indus Cycling Embassy, Trivandrum jointly organized a palliative care awareness bicycle ride from Mannarkad, Palakkad to Kovalam, Trivandrum. The event was flagged off on September 29th and concluded at Udaya Samudra, Kovalam at 5p.m. on October 2nd. The bicycle riders were welcomed warmly at each location by district palliative care initiatives and palliative care enthusiasts. (Image: When Sahayatra Bicycle Riders reached Pallium India on October 2nd, our staff and volunteers and well-wishers gathered to give them a warm welcome.)

The program was organized to spread the message of palliative care to the public, to declare palliative care as a right of every individual.

Young artist Anavadya, who has always been a keen supporter of palliative care, enthralled everyone once again with her caricature skills.

“I think you should accept it gracefully,” said Dr Rajagopal, when someone expressed interest in helping me financially. That was the first time anyone had suggested to me the idea of “accepting help gracefully”. Those were my initial days in Pallium India.

In a recent TED video, Michele L. Sullivan describes how “Asking for help is a strength, not a weakness“. As a person who asks for and receives help from several others on a day-to-day basis, Dr Rajagopal’s and Michele Sullivan’s words have had a huge impact in my life. It takes a lot of courage to accept my helplessness and ask for assistance, whether it is to my best friend or to a stranger. In fact, it takes more courage to accept each one of them with grace and to be grateful at the end of the day for all the help received. And believe me, you are peaceful and your life is beautiful when you are ready to ask for help and accept it gracefully when offered.

Michele has rightly said that empathy is just a concept. The only shoes you can truly walk in are your own. We are all a part of each other’s support networks. With compassion, courage and understanding, we can walk side by side and support one another…

The UK Court of Protection has clarified that decisions to withdraw life support treatment to patients in Permanent Vegetative State (PVS) or Minimally Conscious State (MCS) need not always be taken with judicial approval. It was held that if the decision was taken on agreement between doctors and family members in accordance with the professional guidelines, Court intervention was not a mandatory requirement. Among the reasons:

Treatment decisions up to and including the withholding and withdrawal of life-support are taken by clinicians and families working together in accordance with recognised good practice. All such decision cannot be subject of external supervision;

The decisions involving withdrawal of life supporting system are not so different from other serious medical treatment decisions to justify a different approach;

Cost and time of litigation process is a deterrent to the best interests of the patient. The Court cited the case at hand as an example where the patient had to be in life support for one year awaiting judicial decisions, despite the fact that family and doctors firmly held that continuation of treatment was not in her best interest; and

The grave consequence and risk of error in an advance decision on agreement by family and doctors, and the decision rendered by the court are not so different.

This judgement could be of some significance to us. In the absence of any law on the subject in the country, we understand that a British court’s decision may carry some influence over the decisions of the judiciary in India, while deciding future cases including review petitions, if any.

Hospice Bangladesh along with Aastha, Telecare and Dhaka Medical College celebrated the day by introducing the global participatory public art project: ‘Before I Die’ on the Medical College campus, where people expressed their aspirations in life, something they want to fulfill before they die.

The wall is a movement that opens the conversation about death and encourages people to start important healthcare conversations before they become urgent.

As many who wrote on the wall expressed, they want a cancer free life, a healthy life, and a disease free life before they die.

The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care. Please give whatever you can. No amount is too small.

Nov 8, 2017: Extension for Community Health Outcome (ECHO) Season 2. Topic: “Psychological interventions to pain management.” ECHO is an online learning platform through knowledge and experience can be shared. For details and to register, visit: http://palliumindia.org/courses/echo/ Contact: tipsecho@palliumindia.org

PARTING SHOT

Our world will no more be a confined place to live, for people with disability – if we all set our hearts to it.

Three patients under rehabilitation in Pallium India’s “half-way home” enjoyed an evening seeing beautiful flowers, birds, animals and many other fellow beings. This could not have been possible without a wheelchair friendly vehicle donated by State Bank of India (SBI).

The happiness that springs in their eyes tells us how much and how long they missed all such lovely things in life. One of the patients, with her husband and little one, was so worried to sit for more than a few minutes but the walk made her confident enough to sit for quite long and she is trying to do her activities of daily living. As a social worker – indeed, as a human being – I am very glad that I could also be a part of this change that made her laugh and try.

The little we are able to do to make their days brighter is something we cherish as an organization. We care for you and we are always with you, we will not restrict you because we respect you.

Thanks to all my colleagues for making this happen; and I await more such memorable days.

This wheelchair-friendly van was donated to Pallium India by State Bank of India on July 1st, 2017, as part of their CSR activities. In the words of Ashla Rani, volunteer for Pallium India, (who is featured in this video) “I always had people around me to lift me and my wheelchair to a car and to take me wherever I wanted to go. But now, this vehicle gives me the pleasure of wheeling myself into it without worrying about hurting someone’s back. The difference is huge! Yes, happy to be cared, happier to be more independent.”

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.